Guidelines, Reports and Books

Guidelines for clinical practice in Rett syndrome


We have recently developed recommendations to support clinical practice for gastro-intestinal disorders including growth and scoliosis in Rett syndrome. We used the Delphi technique to develop the recommendations by working with expert panels of clinicians and researchers who were both multi-disciplinary and international. Whilst not a recipe, the recommendations provide a summary of key points and principles for management in relation to Rett syndrome.


You can download summaries of the recommendations including booklets for families and leaflets for clinicians.


Guidelines for gastrointestinal issues:


Growth and Nutrition Booklet - Print quality or Reduced size (for quick download or emailing)


A3 guidelines for growth and nutrition 


A3 guidelines for gastro-intestinal issues 



The guidelines are also available in the following languages:


Czech:  Zlepšování zdravotního stavu dívek s Rettovým syndromem: SPRÁVNÁ VÝŽIVA A TRÁVENÍ Informační příručka pro rodiny a pečovatele



Guidelines for scoliosis:


Scoliosis Guidelines

The guidelines are also available in the following languages:



Danish:  Skoliose i Rett syndrom

French:  La Scoliose dans le Syndrome de Rett

Hungarian: Gerincferdülés a Rett-Szindómában

Spanish: Escoliosis en el Síndrome de Rett

Czech: Skolióza Rett Booklet nebo  Skolióza Rett Booklet (snížení velikosti)


The AussieRett study has published two reports, an inaugural one in 2002 and a follow-up one in 2006.


Inaugural Report


2006 Report




A Story about Paris: Living with Rett Syndrome


Perth Mother Jessica wrote a book to help Paris' classmates at school understand something about Rett syndrome. It has been written in language suitable for children and young people. You may be interested in having a copy for your own family members to use, especially your other children, when explaining about your daughter's condition.

It would also be a useful addition to school libraries and may be helpful to health professionals.

The book can be purchased from the Telethon Institute for Child Health Research for $10.00 including postage.
To purchase please contact us:
phone: (08) 9489 7790/7774    fax: (08) 9489 7700